Here is your opportunity to get to know our truly remarkable families and share their inspiring stories.

FIRST member Katie Smith is more than excited to share her story. After all, it's not just a story about living with ichthyosis. Nor is it simply a story about an "aha" moment, or the journey of a young woman setting out to find her true purpose. To Katie, her life, her skin disorder, her future, are all a part of something bigger, not just a story, but "an obligation to do good in the world." (Read Katie's story.)

In 2014, the Saylor family of Pennsylvania adopted a baby boy affected with harlequin ichthyosis. Their journey from the very first moment they met Daniel, to today, where the happy one-year-old is making strides in his development, has been nothing less than amazing. (Read Daniel's story.)

Kenny was born in a small southern New Jersey town, Glendora, in 1970, a time period when very little was known about his skin condition (ARCI-lamellar type ichthyosis), and even less known about its treatment. His childhood, once depicted in a documentary entitled "Kenny", was admittedly not ideal, as he not only was singled out for his skin condition, but was also the child of divorce at a very early age. (Read Kenny's story)

There many more stories from our families.
Please click one of the links to the left for additional stories.